Her Funeral

One of the few luxuries that come with having a terminally ill child was the opportunity to plan what I considered to be her “perfect” funeral. At least that was the way I chose to look at things.

About six months before she died, her renal system began shutting down which is one of the signs that let us know we were nearing the end. I spent a couple of months denying the inevitable and then I kicked in to overdrive. In addition to loving her while she was here I knew I needed to prepare for the day she was leaving.

At that point in time I was a member of the local quilting guild. That’s right, before I began my life as a foster parent I actually had time to sew. That seems like a lifetime ago, and it was. I was a much different person back then, struggling to hold on to a rapidly failing marriage and yet I was surrounded by loving, caring compassionate adults.

At the time Madeleine was dying, I thought the people I was with would be with me forever. That there would be an unpenatratable bond, the superglue of all things Holy and Good and that it would last Forever.

A wonderful group of quilters that I was close with at this time banded together and made my daughter an absolutely beautiful party dress. You see, my philosophy was since Madeleine had not left our home in years she was about to have the opportunity of her lifetime.

And yes, I did understand that her soul was no longer with us. It left during that long last breath and did a rapid-fire shot directly to heaven in what I am guessing was some sort of record breaking speed.

In fact, I missed that final breath. Her last night was a terrific gathering of all of her nurses. We all stayed in her room and ate pizza and drank soda while she drifted in and out of consciousness. Our priest came to administer last rites.

Anyway, after our night of celebrating her life and remember most of the highlights and a few of the lowlights, our guests left and we napped on couches knowing it could be any minute. Madeleine’s nurse told us we should rest and she would get us when it got closer.

“You could tell by her respirations she is nearing the end,” the nurse advised hours later. Madeleine’s dad went in her bedroom to say good-bye and I took a quick trip into the bathroom.

And I missed it. I know what everyone is thinking because I thought it, too. How could you take a nap when you knew your daughter was going to die? And, how can you go to the bathroom when you were just told your daughter was going to die any minute? And, she really didn’t need you there because they can control the last breath. Or how about this, you were there for all the other things she needed and it was alright to miss this moment.

The thing is she had experienced a regular Madeline Monday with everything quite typical. Monday night to Tuesday morning, some respitory crud settled in and rapidly turned to pneumonia. I had spent days knowing we were this close to the end. I was exhausted from waiting for the end.

Today I can laugh about it. Today the fact that I was late for her last breath gives me a unique spin on the realities I face today. Sometimes, a disgruntled child of mine will hop in the back seat of the van and glare at me, “You’re late.” And in my head I’ll think a quick retort, “So what, at least I am here. I have a history of being late. I was late when Madeleine died, too, but I am here now.” Talk about the ultimate reality check. There isn’t a kid out there that can make me feel guilt about being late for any event. Once you’ve been late for something of that caliber everything else is small potatoes.

Of course, that last paragraph is completely unique to me and lives within the confines of my head … until now, I guess. But it is that uniqueness that keeps me anchored. In all honesty, my kids have been raised to know that I will always be there and they aren’t the kind of kids that panic if I am a minute or two late. After all, I am only human at this point.

Anyway, the call went out to my friends to complete her dress. They were in constant contact with the funeral director regarding measurements. I had told my friends what I had in mind. You see, Madeleine had been bed-ridden her entire life. Once she made it to heaven, I imagined there would be oodles of twirling and dancing and tappy-tap shoes that would make awesome clicking noises when you walked.

Although she was seven when she died, she had fit into about a size ten or twelve dress. I’ll always be grateful to the women that made her dress because what I wanted couldn’t be found anywhere besides my imagination. It was the palest pink possible, a fitted top with lace around the neck, short puffy sleeves with a little lace around the rim, and tons and tons of petticoat underneath, the kind of dress that if she could twirl her unders would show. I was planning a party, after all.

I call from the funeral home informed me that she needed to have underwear and shoes. It didn’t matter if she wore diapers here; she had to wear unders there. And shoes? I had never bought her shoes before. It had never been necessary because her feet did not bear weight.

Another girlfriend and I went shopping. When we were looking for unders we discovered gorgeous bras and unders available in coordinated pairs. I couldn’t believe that God had taken this awesome opportunity and provided me with the incredible chance to buy a bra for my daughter! I never even realized how much that moment would have meant to me had it not been laid out right there.

Now she certainly didn’t need a bra as much as I needed to buy her one. And as I paid for these “foundations” I felt absolutely fabulous. It could have been the fact that I was functioning on pure adrenaline and a minimal of sleep, but I was taking care of needs I didn’t even realize I had and it was amazing.

Shoe shopping was a little bit more difficult. Once again, I knew what I was looking for and it took a few stores until I got it right. The perfect white tappy tap shoes, thin white strap across the top, a tiny white pleather bow and black soles that I knew would leave marks on the dance floor.

And it was at that moment, and I swear as long as I live my enthusiasm will never soar that high during a shopping trip again, I saw the perfect purse for her. After all, she couldn’t wear the bra but I needed her to take it along for later. And yes, I knew that all this shopping and funeral planning was about me and my needs. Fulfilling dreams and lacking regrets was my subconsciously my ultimate goal.

The purse was child size clutch with a magnetic closure with a sparkly bangle on the clasp. Inside the purse were her bra, some Kleenex, a library card, and a 1988 quarter.

When we were little girls leaving the house without our parents we always had to take some Kleenex, our library card for identification purposes and a dime to call home if necessary. At the time I got the library card for Madeleine it was strictly for me. I planned to keep it in my wallet forever because once she was gone I would always be able to see her name in print whenever I needed. And I honestly knew she wouldn’t be calling home. It was about the opportunity to pass forward a tradition.

Oh, and let me tell you about her hair. We had been growing it long for quite awhile. I knew she was terminally ill, I knew we would be losing her. I had no control over those facts. But, oh baby … I could control that hair. And I did. It was a luxurious chestnut brown with almost rust-colored highlights. She wore a Victorian-style up-do, with the tiniest Tea Roses tucked around a crown of Baby’s Breath. And yes, the Tea Roses were died to match the exact shade of her dress.

The first big event was the “reception” at the funeral home. The room was filled with white flowers of every kind imaginable. Of course the casket had been picked out ahead of time, but after so much time passes you kind of forget what it looks like. To me, it appeared like a gorgeous jewelry box. Shiny white outside, satiny inside, puffy padding around the rims and the vivid contrast of the deep purples from the quilt I had made looked dazzling against the stark white background.

Madeleine’s pinkness took my own breath away. Of course I never expected her took look life-like because life-like for her meant typically meant very pale white to sometimes dusky blue. I had never seen her look so pink and it took a little bit of time to get used to that shade.

Her hair was stunning. I talked with the hairdresser for the funeral home and together we had sketched out some of the hairstyle possibilities. It was a seriously good hair day for Madeleine. Little curls escaped the upsweep in just the right places. I had never seen her look so life-like.

With shoes on her feet and a clutch purse in her hand, she looked ready to take on the next phase. I, too, was ready.

Once we were settled in our reception area the crowds came spilling in … I was hugged and touched and cried upon. Previous nurses that had left the home health care organization in hopes of greener pastures were there. A couple of our city’s pediatricians were there. Old neighbors were there. People that I graduated with from high school were there. Countless quilters were there. The entire family from my ex-husband’s side was there.

All of these folks were gathered to show love and support for the family of a seven year old girl that never, ever left room. Even her doctors came to her. And when I look at the guest registry there were names of people that I had no idea we even there, yet there were the signatures.

After the reception we had a short prayer service and I kissed my daughter good night. We went home to a house that was empty for the first time in seven years. We had always had twenty-four hour nursing care, an adult in our home, if we left the house to come home after dark, well a porch light would be left on for us upon our return.

That day we had left for the funeral home mid afternoon. It was the first time we approached the house to see it pitch black. Now that was hard. What had always felt like our well-lit home just seemed like someone else's very dark house. I think that was the first time I felt sad that week.

I was beginning to wind down. Nothing prepared me for life after the funeral. I hadn’t thought that far ahead and even though my mind was racing with anxiousness about tomorrow I was unable to comprehend my life after Madeleine.

The next morning was cold, bitter bitter cold. The kind of cold that makes you wonder why eyeballs don’t freeze if they are outside long enough. Yup, that kind of cold.

And when it is that cold out it doesn’t really snow, it is more like “snow sparkles.” You just kind of get the essence of snow with little glimmers of what looks like multi-faceted sugar crystals that drop in slow motion kind of like individual sandstorms except they shimmer when the light hits them right. And they aren’t always there, you can see they mostly with your peripheral vision. It was that kind of a day.

Our kids were at a Catholic school and we attended the Wednesday morning mass in Madeleine’s honor. I had specifically requested that Amazing Grace NOT be played during Madeleine’s actual funeral mass which would an hour after this mass, so it really surprised me when the communion song started. I had convinced myself that if Amazing Grace was played at my daughter’s funeral I would crumble every time I heard the song from that point forward. Therefore, it was banned. Or at least I attempted to ban it.

Only this version wasn’t like any Amazing Grace I had ever heard before. It was bluesy and seductive and was intertwined with scraps of When The Saints Come Marching In. And I felt safe because it was so unique. And as the song continued I felt bold and strong and tall and almost larger than life itself. Which was a good thing because I think by the time we got to the cemetery I shrunk rapidly and by then I was back to my normal self again.

When the school mass continued, we convened in the usher’s room and waited until Madeleine’s casket arrived. When everything was set up in the church foyer, we got to be with her again.

This moment wasn’t nearly as breathtaking. This was the beginning of the sadness.

Madeleine’s nurses began to arrive. They were greeted with white tea rose corsages and they were to escort her casket to the front of church at the end of the fair well festival. I knew I was getting tired. After a week full of yesterdays I had actually begun to feel spent.

As the crowd filtered to their pews I noticed several parents had pulled their children from our kid’s school and joined us for the remainder of the funeral. Just thinking about that brings tears to my eyes and a lump to my throat at any given moment to this day. Something about the thought of another mother’s child praying for our family during the loss of our child becomes overwhelming to me.

As we began our procession up the runway (we belong to a very large church with an extremely long center aisle, the kind of aisle most brides only dream about) our pew looked miles and miles away

The nurses led the way and we followed blindly. I don’t remember walking front the back of church to the front of church but I do remember my thoughts.

I was brought back to a moment in time before I was a mother. I was at our local mall and was headed towards my parked car. It was dark and I felt like I was being watched by someone. It was creepy and I felt terrified deep, deep down to my innards. Then I wasn’t able to identify the feeling, but today I know it as being vulnerable.

Now flash forward three years. Same parking lot, same vehicle, same me, similar scene. Only this time I have a child with me. My child. And I am not afraid. I dare anyone to come between me and this child of mine. Don’t even think about harming either one of us. I am invincible and I can conquer any fool that dares to come close.

And it’s girl. Wow, in all my dreams she was a boy. I blonde haired, blue eyed boy. What was I going to do with a girl? Twenty two minutes later her brother arrived. Two boys, one girl. A girl. Paper dolls. Do they even make paper dolls any more? I was not ready for a girl. I didn’t even really have a girl name. A girl? I had a girl? A daughter. I have a daughter. Daughter sounds so much different than son. The word “son” is short and to the point. Daughter is a long drawn out word with two syllables and silent letters, a mystery to spell and even harder to fathom.

As we floated from the back of church to our reserved region, the pianist tinkled out a very simple medley of Twinkle Twinkle Little Star that escalated to a full blown When You Wish Upon A Star.

The combination of the two songs filled the large church. The music bounced off the alter and on to the saintly statues. Not even a church of this size could contain the medley. Quarter notes sprung off of the nurses only to reverberate on the children.

And as the songs concluded, everyone was smiling when the sun spilled through the leaded glass windows and rested over the closed white casket. Adults that were previously sobbing were grinning at the place where the sun settled.

The sermon was about stars and ice cream. That same day Madeleine died our parish lost a ninety-plus year old member who was the founder of a local ice cream business. This was not your run-of-the-mill ice cream, this was the good stuff. Quality ice cream at reasonable prices.

Anyway, the sermon’s journey took us from a seven year old girl who never ate an ice cream cone to an entrepreneurial gentleman who dedicated his life to making the perfect ice cream for children of all ages. Sure, I mumbled it out in a quick sentence but you’ll need to trust me on this one, it was the most beautiful story about two unknowns from completely different lifestyles, with almost a ninety year age difference and yet they shared the same beginning and as a result of their time on earth, the same ending.

I know we had a beautiful rendition of On Eagles Wings sung by a voice as clear as a bell.

And everyone chuckled just a little bit when the same woman then sang Disney’s A Whole New World. I chose that song just to hear this part:

A whole new world
A hundred thousand things to see
I’m a shooting star
I’ve come so far
I can’t go back to where I used to be

And because it was still the Christmas season, we walked out of church when we completed a robust version of Joy To The World, which I think should be a funeral anthem.

I have since learned to leave a light on inside and outside of our house when we leave so I always come back to a well-lit home.

I have learned that some friends are meant to be a piece of your life at a certain moment of time and that even though you lean on them heavy and hard it really is alright not to stay in touch with them. And if the ones you were leaning on are sincere and geniune with their love, you will leave an impression that they will carry with them forever, too.




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